Govt details plan to share de-identified e-health data

The federal government has kicked off public consultation on the potential secondary uses of de-identified health data sourced from the e-health records of Australians.

The plan to mine My Health Record data for research and public health purposes has been on the cards since late 2015, when the Department of Health approached the market for advice on the steps it would need to take before allowing the “secondary use” of the information collected.

It engaged health industry management consultancy firm HealthConsult shortly after, and planned to begin consultations on the development of a framework for the secondary uses of My Health Record data in October 2016.

But the plan was pushed back, and since then the federal, state and territory governments have agreed to a new opt-out arrangement for the My Health Record that will see a record automatically created for every Australian, unless individuals choose against it during a specifically designed opt-out period currently planned for mid-2018.

Data collected through the My Health Record cannot currently be used for any secondary purposes, and remains accessible by only individuals and healthcare providers.

This is despite the My Health Records Act 2012 stating that health information from the e-health records system “may be collected, used and disclosed 'for any purpose' with the consent of the healthcare recipient”.

However, before provisions within the Act can be implemented, a framework governing the secondary use of My Health Record system data needs to be created.

The department and HealthConsult have now released a consultation paper for the development of a draft framework and implementation plan, which will guide when My Health Record data can be made available.

This may include for “policy analysis, health services program development, research, quality and safety measurement, public health, performance management and to develop and improve healthcare services and treatments,” the paper states.

The release of the data is intended to meet growing demand from government, research and non-government organisations, but the government must also address the “relevant ethical, political, privacy, technical, and social issues” of doing so.

“While not new, these issues will be given careful consideration in the context of the ever expanding volume of health data; the need to improve data access; and to provide coherent policies and standards of evidence-based best practice to support implementation of secondary use arrangements,” the paper states.

The paper said data won’t be used to “determine remuneration or appropriate rebate claiming patterns for healthcare providers”.

The department is currently asking for submissions to inform the development of processes and controls for the use of My Health Record data, but it wants to limit conversation to the explicit requirements of the existing legislation. (i.e. that that only de-identified data from the e-health record can only be used for research and public health purposes and not commercial and non-health related ones.)

“The Department seeks to understand the views of consumers and healthcare provider organisations about the grounds upon which it would be acceptable to allow the secondary use of My Health Record data,” the paper states.

“Secondary use of health data has the potential to enhance future healthcare experiences for patients by enabling the expansion of knowledge about disease and appropriate treatments, strengthening the understanding about effectiveness and efficiency of service delivery, supporting public health and security goals, and assisting providers in meeting consumer needs.”

The consultation paper indicates that the framework will be consistent with the work of the $131 million Data Integration Partnership of Australia, which aims to connect all the separate datasets from across the public services to better examine how government programs are delivered.

And while the framework will be developed ahead of any action by the government in relation to the Productivity Commission's data availability and use inquiry, it is expected to be developed with key principles from that inquiry in mind.

The consultation process will close on November 17.